Playing God?

The Ethics of Genetic Technologies

Lawrence M. Hinman Professor of Philosophy University of San Diego Last updated: 4/30/2020

(c) Lawrence M. Hinman 1 4/30/2020

Introduction

• • • • • • • • • • Two Key Developments IVF Human Genome Project Three technologies Genetic Screening PGD Genetic Manipulation Arguments against Genetic Screening Arguments against Genetic Manipulation Arguments in support of Genetic Screening ©Lawrence M. Hinman 4/30/2020 2

The Larger Picture

• • •

For millennia, sex and reproduction were inextricably linked together.

With the advent of “the Pill” it became possible to have sex without reproduction.

With the advent of IVF, reproduction without sex becomes possible.

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IVF

• • • The advent of IVF (in vitro fertilization) changed the moral landscape of human reproduction in fundamental ways.

Louise Joy Brown was born in in England on July 25, 1978—the first baby successfully conceived through IVF According to Reason Magazine , 3.5 million children have subsequently been born using assisted reproductive techniques

.

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The Moral Implications of IVF

• • •

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• For the first time in human history, conception occurs outside the woman’s body. This has raised several new moral issues.

Because egg extraction is a painful and difficult process, doctors typically induce super-ovulation through hormone therapy in order to be able to harvest a large number of eggs in a single surgical procedure. This produces a

surplus of eggs.

Women facing chemotherapy (or other factors, including aging) may choose to have some of their eggs frozen and available if later for implantation if they want to have a child.

It is much more efficient to store fertilized eggs (embryos) than eggs alone, since they are more likely to lead to successful pregnancies. This leads to a

surplus of frozen embryos

. As a result, we now have in the United States approximately 400,000 frozen embryos, many of which will never be implanted.

What is the moral status of these frozen embryos? How should we deal with those embryos that are not used for procreation?

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The Human Genome Project

• • Begun in 1990, the Human Genome Project ($3B) was completed in 2003. It provides a map of the 25,000 genes in the human genome. For the first time, scientists had a map of (most of the) human genome .

Project Encode Followed by the Project .

1000 Genome • http://www.nhgri.nih.gov/HGP/ ©Lawrence M. Hinman 4/30/2020 6

Moral Implications of the Human Genome Project

• • • • Mapping the human genome was the first big step toward understanding the genetic basis of diseases and disorders of various kinds. Much still remains to be understood. It’s a bit like having an accurate map of an entire country when you have visited only a few places in that country. Much remains to be learned, even though the outlines may be clear.

Most diseases are complex combinations of environmental factors and many genes (polygenic). A few are much simpler, due to a single gene (monogenic).

As we are increasingly able to correlate specific genes (or groups of genes) with particular diseases and disorders, we will be able to do genetic screening for them. We can detect the presence of a particular disorder in a specific person.

Eventually, scientists may be able to modify some of these genes in utero and provide cures for potentially devastating diseases.

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Arguments in support of genetic manipulation

• •

Utilitarian: produces overall a better group of people (eugenics) Libertarian: a matter of individual liberty to decide what genetic enhancements one wants

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Arguments, Objections and Concerns about Genetic Technologies

• • • • • • • • • • • A number of objections and concerns have been raised to emerging genetic technologies: The Risk Argument. Too risky at this time—we simply don’t know enough to do this safely The “Playing God” Argument.—takes on privileged more appropriate for God than human beings

The “Unnaturalness” Argument

The “Life is a gift” Argument (Sandel) The Autonomy Objection. Violates child’s autonomy by choosing a future for him/her

The Slippery Slope argument

The Concern about who decides The Concern about Justice as Fair Access

The Discrimination Argument The Embryo Argument

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The Risk Argument

• • • • • • There is much that we do not yet understand about human genes and the complex interactions among genes and between genes and the environment. The less we know, the riskier our diagnoses and interventions will be.

Genetic manipulation risks fall into two categories: Somatic genetic engineering. Genes are added to cells other than egg or sperm. Offspring cannot be affected by these changes. Thus the risk is generally confined to the individual under treatment.

Germline genetic engineering involves genetic alterations that can be passed on to subsequent generations. Here the risks are far greater, containing the possibility of changing human nature itself. These interventions are done on eggs, sperm, and embryos.

Altering genes may result in changes that we do not expect. If these changes can be passed down to future generations, there is a possibility of catastrophic results.

We may create pressure for people to use these techniques as we move into the age of what is now called “consumer-driven genetics” or “consumer-driven eugenics.” ©Lawrence M. Hinman 4/30/2020 10

The “Playing God” Objection

• • • • Some critics maintain that altering genes is “playing God.” The force of this objection seems to depend in part of one’s beliefs about the role of God in human affairs.

• If one sees human life (and presumably the universe as a whole) as guided by God’s loving hand (Matthew 10:29 “…not a single sparrow can fall to the ground without your Father knowing it”), then it would seem a usurpation of God’s role for humans to intervene in this way. Humans lack the proper authority, the proper knowledge, and the proper power to exercise this role.

Critics of this position sometimes argue that it proves too much, if it proves anything at all. Wouldn’t it be an objection to surgery as well, perhaps to medicine in general?

On the other hand, if one sees the universe as simply guided by chance (and, more locally, Darwinian selection), then this objection is likely to have little force. Given the choice between mere chance and human intervention, the balance clearly tips within this perspective toward human intervention. As Craig Venter is reputed to have quipped when asked whether he is not trying to play God, he replied “Well, someone has to.” Wherever one stands on these larger theological issues, there is clearly a kernel of truth in this objection, especially in regard to germline genetic interventions: we must acknowledge that we will need great wisdom, foresight, and expertise if we are to intervene in this realm.

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The “Unnaturalness” Argument

• • • • Genetic manipulation strikes many people as profoundly unnatural, against the natural order.

In theistic versions of this argument, the natural order is seen as created by God and thus, by this fact, good; hence, that which goes against the natural order is not only unnatural but also bad. (Some arguments against homosexuality have this same structure.) Not all versions of this argument are explicitly (or even implicitly) theistic. Many believe that what is natural is good, and hence was is unnatural is bad. We find this in various “back to nature” movements and in a long tradition of naturalism in literature and the arts, especially—but not exclusively—among the Romantics. Emerson and Thoreau exemplify this view of nature.

The Transhumanist replies to this argument by maintaining that we have now reached a stage in human evolution in which we are actively and consciously transforming human nature. To put the matter somewhat paradoxically, the conscious transformation of human nature is the next natural step in human evolution.

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The “Life is a gift” Argument

• Michael Sandel, the noted political philosopher whose course on Justice has long been one of the most popular courses at Harvard, argues that many of us, regardless of particular religious commitments, believes that on some level “life is a gift.” In his book

The Case Against Perfection

(2009), Sandel argues that “the pursuit of perfection is flawed for reasons that go beyond safety and fairness. The drive to enhance human nature through genetic technologies is objectionable because it represents a bid for mastery and dominion that fails to appreciate the gifted character of human powers and achievements.” © Lawrence M. Hinman, Ph.D.

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The Autonomy Objection

• • • This objection begins with a quasi-libertarian premise about the individual’s right to autonomy, to determine his or her own destiny. Parents obviously already make choices about their children’s futures; indeed, it is impossible to avoid doing so. Yet often good parenting seems to consist of finding a balance between who the parents want their children to be and who the children themselves want to be. The older the child, the more the weight shift to the child’s preferences.

Genetics, particularly genetic enhancement, offers the prospect of making very specific choices that could profoundly shape a child’s future. Most would not quarrel with genetic interventions that prevent terrible diseases such as colon cancer, but many would become increasingly uncomfortable as we move toward a world in which parents could shape the destiny of future children by shaping various abilities—athletic, musical, mathematical, artistic—and even bodily characteristics. We are all familiar with the image of overbearing parents at their children’s soccer games. What if, prior even to conception, they were able to make choices to enhance the physical prowess of their yet-to-be-conceived children. Longer limbs may increase the chance of a gold medal in swimming, increased muscle mass may be an advantage in weightlifting, etc. At this point, the preemption of the child’s autonomy seems incontestable.

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The Slippery Slope Argument

• • • • In logic, the slippery slope argument has the following structure. It maintains that if we move from A to B, then B will eventually lead to C, D, E, and finally Z, the bottom of the slope. Z is objectionable, thus the move from A to B must be objectionable as well.

The argument is fallacious in those cases where B does not necessarily (or even frequently) lead down the slope to the bottom. Thus someone may move from non alcoholic drinks (A) to an occasional glass of wine (B), but then does not necessarily lead to hard liquor (C) and marijuana (D) and cocaine (E) and eventually heroin (Z). We can easily imagine that setting foot on the path of genetic tampering could eventually lead to some horrible end state, but in order to make this a sound argument, it is necessary to do more than simply imagine this. We must show that each step will necessarily—or at least highly probably—lead to the next, and then demonstrate that the final state is clearly unacceptable. At this stage, this argument seems to be highly speculative. We may simply lack the forecasting abilities necessary to link the successive steps together tightly enough to sustain a strong argument. © Lawrence M. Hinman, Ph.D.

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Slippery Slope--illustrated

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The Concern about Who Decides

• • • • • • The possible decision makers include: The prospective parent(s) in scenarios involving pregnancies; The patient in scenarios involving interventions on an adult patient; The physicians and associated medical personnel and professional associations such as the AMA; Those who are paying for the procedures, which may include the insurance

companies;

• • • The government, which may: prohibit certain things (such as the use of human embryos), may establish safety requirements (procedural safeguards to protect consumers), or may mandate particular actions (such as vaccinations or screening or reporting).

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The Concern about Fair Access

• • • With many medical advances that hold the promise of significant alleviation of human suffering, we are concerned that the benefits of genetic technologies will not be limited to the few who can afford them.

Justice as fairness seems to demand that the allocation of critical health resources be as much as possible on the basis of need. When it comes to enhancement, however, the case appears to be less compelling. © Lawrence M. Hinman, Ph.D.

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The Concern about Discrimination

• • Genetic testing presents the specter of possible discrimination on the basis of genetic conditions that would perhaps not even be evident in daily life. Such discrimination could be an issue in schools, in the workplace, and in medical insurance. Genetic manipulation and enhancement raise an even more disturbing specter: the possibility of a two-tiered society, a society divided into those who are enhanced and those who are not. The movie

Gattaca

depicts just such a society and provides a powerful vision of the potential dangers lurking along this 9/22/10 path.

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The Embryo Argument

• • • • • Genetic interventions that involve IVF raise a special difficulty: the embryos that are produced and often discarded in the process of IVF therapy.

We will look separately at the question of the moral status of the embryo, since this is also an issue in both abortion and human embryonic stem cell research. Several points, however, should be noted here.

In IVF, for the first time in human history, human embryos are created outside of their natural environment (the womb). What is their moral status? Are they to be treated as persons? As mere medical material? As the property of the donors? As entities having some kind of moral weight in between persons and mere medical waste? These are difficult questions, about which good, reasonable people continue to disagree.

One approach taken by Italy and, to a lesser extent, Germany has been to ban or severely restrict the harvesting and fertilization of eggs beyond those that can be immediately implanted in the woman desiring to become pregnant. Another approach, put forward during the Bush administration, was to treat fertilized eggs as children available for adoption. These became known as “snowflake children.” © Lawrence M. Hinman, Ph.D.

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• • •

The Arguments in favor of Genetic Interventions against Diseases

Those who defend the use of genetic interventions in the battle against diseases advance several arguments, but the principal one is about compassion and the alleviation of suffering.

Genetic interventions that prevent terrible, often lethal, diseases seem to offer the strongest ground for the argument from compassion. If we are able to alleviate terrible human suffering in such cases, and if we do not in the process cause any great harm (possibly a controversial point), then we would seem to have a strong moral argument in favor of such interventions.

The argument from compassion may be even less compelling than an argument from the right to basic health care. If individuals have a positive right to basic health care, and if genetic interventions against diseases fall into this category, then this becomes something to which individuals are entitled.

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Arguments in Favor of Genetic Enhancements

• • • The distinction between disease and enhancement remains a troublesome one, but clearly some genetic interventions fall into the category of enhancements. Here the arguments are less likely to turn on compassion and entitlement and more on individual liberty.

Those who advocate genetic enhancements, such as Greg Stock at UCLA, maintain that the pursuit of such goals falls squarely within the domain of individual liberty. We are entitled, he maintains, to pursue whatever goals we desire as long as this does not conflict with the freedom of others.

The advocacy of individual liberty is often joined with a distrust of government as the regulator and a faith in the wisdom of the free market to sort such matters out in the best manner possible—or at least in a way better than the government could accomplish.

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Choosing Between Life Paths

Genetic manipulation is very different from abortion:

• Abortion is a matter of life or death, of deciding whether a fetus lives or dies.

• Genetic manipulation is a matter of deciding which life an individual may have by altering the individual’s genes; It is a matter of which future the fetus is going to have.

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Scenario #1

• • • Imagine that it is possible to decide height, skin color, hair color, eye color, sex and other physical characteristics of a newly-conceived child.

Should parents be allowed to change these characteristics if they choose?

Will this lead to designer babies? To uniformity? Will this deplete the gene pool?

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Scenario #2

• • • • Imagine that: • Scientists have isolated the genes that predispose sexual orientation; • You are going to have a child; • Tests have determined that your child will probably be gay.

Your doctor asks you: would you like us to alter the genes that predispose toward sexual orientation so that the child will not be gay?

Further assume that you “have nothing against gays,” but know that overall a gay person will face more discrimination and suffering—all other things being equal—than someone who is heterosexual.

What should you do?

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Scenario #3

• •

Imagine scenario #2 with the following changes:

• Doctors have determined that your child will have a heterosexual orientation; • You are gay.

If the doctor offered to alter the genes so that your child would be gay as well, what should you do?

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Scenario #4

• • You are pregnant, and a routine test reveals that your child has a particular gene (FGFR3) that results in achondroplasia, a form of dwarfism. The doctor asks you whether you want to have the gene altered so that the child’s height is “normal.” What should you do?

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Scenario #5

• • • Imagine the scenario is similar to that given in #4, except that you and your spouse are both dwarfs and the doctor tells you, after a routine test, that your baby will be “normal” height.

A friend, aware that it may be difficult if both parents are dwarfs and the child is not, suggests that you ask that the child’s genes be altered so that the child too will be a dwarf.

What should you do?

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Scenario #6

• • • • • • “A boy has been born to a British couple who want to use stem cells from his umbilical cord to treat an older brother with a life threatening blood disorder.

Michelle and Jayson Whitaker's baby, Jamie, was genetically selected while he was still an embryo to be a near perfect match to four-year-old Charlie. The couple went to an American clinic for test tube baby treatment because the selection procedure is not allowed in the UK.” Source: http://www.bbc.co.uk/religion/ethics/issues/designer_babies/ Also see Jodi Picoult, My Sister’s Keeper Kazuo Ishiguro, Never Let Me Go ©Lawrence M. Hinman 4/30/2020 29